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Sjogren-Larsson syndrome
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What to expect, medication etc - First appointment since Systemic Sclerosis diagnosis
Hi, I hope you can advise. Since November 2023 I have had Raynaud's, then December Severe Dry Eyes and mouth, In May 2023 landed up with medication for Sicca Sjogren's (Cyclosporine & Pilocarpine). Blood test done at the appointment showed Systemic Sclerosis (anti TH/TO) as well. I was advised of this
Hi, I hope you can advise. Since November 2023 I have had Raynaud's, then December Severe Dry Eyes and mouth, In May 2023 landed up with medication for Sicca Sjogren's (Cyclosporine & Pilocarpine). Blood test done at the appointment showed Systemic Sclerosis (anti TH/TO) as well. I was advised of this
Jules1821
in
Scleroderma & Raynaud's UK (SRUK)
10 days ago
MTHFR and Lupus
I noticed that some members have both of these diagnosis as well as Sjogrens. No one ever checked my homocysteine level until after I had Complete Heart Block and was implanted with a Pacemaker/defibulator. I have always felt that if the MTHFR was diagnosed before all the other autoimmune diseases, I
I noticed that some members have both of these diagnosis as well as Sjogrens. No one ever checked my homocysteine level until after I had Complete Heart Block and was implanted with a Pacemaker/defibulator. I have always felt that if the MTHFR was diagnosed before all the other autoimmune diseases, I
DogHospiceMom
in
LUPUS UK
2 months ago
Light compression gloves
Hi everyone, does anyone have any recommendations for light compression gloves? Not the type with splint inserted. I have a swelling in my right hand (at the outer side below my wrist joint) which is very painful, am waiting to see my RA specialist but haven't received the appointment yet. I take 20mg
Hi everyone, does anyone have any recommendations for light compression gloves? Not the type with splint inserted. I have a swelling in my right hand (at the outer side below my wrist joint) which is very painful, am waiting to see my RA specialist but haven't received the appointment yet. I take 20mg
Manzana1
in
NRAS
3 months ago
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Sjogrens Syndrome
Sjogrens, Raynauds, Mixed Connective Tissue Disorder….. was diagnosed maybe 20 years ago with Sjogrens. No treatment was needed other eye drops. Then I started having the dry mouth and dental issues. I currently taking 400mg daily of hydroxychloroquine. The medication has helped tremendously .
Sjogrens, Raynauds, Mixed Connective Tissue Disorder….. was diagnosed maybe 20 years ago with Sjogrens. No treatment was needed other eye drops. Then I started having the dry mouth and dental issues. I currently taking 400mg daily of hydroxychloroquine. The medication has helped tremendously .
Juanburr1950
in
Scleroderma & Raynaud's UK (SRUK)
4 months ago
A useful option-gastro resistant empty capsules
a post yesterday reminded me to tell you all that I’ve been taking my preds in gastro resistant empty capsules for a couple of months now. This means I can take them without food around midnight. But I have also taken them at 11pm ish and not noticed any difference. I asked a gp if I should still take
a post yesterday reminded me to tell you all that I’ve been taking my preds in gastro resistant empty capsules for a couple of months now. This means I can take them without food around midnight. But I have also taken them at 11pm ish and not noticed any difference. I asked a gp if I should still take
Freshairfiend
in
PMRGCAuk
5 months ago
Recently diagnosed
I received a note from my Dr. in My Chart that due to my liver enzymes still being elevated that I meet the criteria for a diagnosis of Pbc. I had made an appointment with another Hepa for a second opinion and that appointment is in two weeks. I'm completely torn if I should bother. Its been a long time
I received a note from my Dr. in My Chart that due to my liver enzymes still being elevated that I meet the criteria for a diagnosis of Pbc. I had made an appointment with another Hepa for a second opinion and that appointment is in two weeks. I'm completely torn if I should bother. Its been a long time
Zelda5
in
PBC Foundation
5 months ago
Nailfold infection
I have my second nailfold infection in 2 months - it is proving difficult to resolve and a few days ago a telangectasia bled profusely for no reason. Is this connected to my Systemic Sclerosis or just a coincident. Thanks for any thoughts on this.
I have my second nailfold infection in 2 months - it is proving difficult to resolve and a few days ago a telangectasia bled profusely for no reason. Is this connected to my Systemic Sclerosis or just a coincident. Thanks for any thoughts on this.
janetfmauk
in
Scleroderma & Raynaud's UK (SRUK)
6 months ago
Sjogrens - Tooth Loss, Gum Disease
Hello, I'm new to this and hoping someone can help. I have Sjogrens and a couple of other autoimmune conditions. I experienced a dramatic deterioration with teeth and gums 2 years ago, dentist advised I would lose all my teeth within 6 months and because of the lack of saliva I could not get dentures
Hello, I'm new to this and hoping someone can help. I have Sjogrens and a couple of other autoimmune conditions. I experienced a dramatic deterioration with teeth and gums 2 years ago, dentist advised I would lose all my teeth within 6 months and because of the lack of saliva I could not get dentures
Crystal68
in
LUPUS UK
8 months ago
removal of rheumatoid nodule
I am due to have a nodule removed from my thumb next month under local anaesthetic. Does anyone know if I have to stop my idacio jab and if so for how long before and after? I am having trouble contacting my advise team!
I am due to have a nodule removed from my thumb next month under local anaesthetic. Does anyone know if I have to stop my idacio jab and if so for how long before and after? I am having trouble contacting my advise team!
Zip1
in
NRAS
11 months ago
LDN and Primary Sclerosing Cholangitis?
So my husband’s Hepatologist said his MRI looks like PSC. We know he has parasites because he’s been flushing them out like crazy. So we aren’t sure which came first. Anyone know if LDN can help?
So my husband’s Hepatologist said his MRI looks like PSC. We know he has parasites because he’s been flushing them out like crazy. So we aren’t sure which came first. Anyone know if LDN can help?
TruthWillSetUFree
in
LDN Research Trust
1 year ago
First night on Buprenorphine
So today I took 0.2 mg of Buprenorphine, thinking it was better to start low. The effect was incredible. My legs didn't move at all. In fact, the effect was so effective that I even got scared. My body was so relaxed. I got a little anxious that I may not wake up if I felt sleep. I layed there amazed
So today I took 0.2 mg of Buprenorphine, thinking it was better to start low. The effect was incredible. My legs didn't move at all. In fact, the effect was so effective that I even got scared. My body was so relaxed. I got a little anxious that I may not wake up if I felt sleep. I layed there amazed
Anthas
in
Restless Legs Syndrome
4 days ago
question
I started tapering prednisone 10 one day 5 the next for 4 weeks starting 25/6 and since Thursday all of my symptoms are back well my pleural effusion is definitely back with a vengeance. Could this be down to the reduction? Sorry my heads all over the place, my breathing hurts and I’m in so much pain
I started tapering prednisone 10 one day 5 the next for 4 weeks starting 25/6 and since Thursday all of my symptoms are back well my pleural effusion is definitely back with a vengeance. Could this be down to the reduction? Sorry my heads all over the place, my breathing hurts and I’m in so much pain
Numptybrain
in
PMRGCAuk
13 days ago
buprenorphine Patches For Fibromyalgia Head Hair Loss
Been on buprenorphine patches & have noticed head hair loss.Now changing from 5mg to 15 mg shortly as 5 mg doesn't work on me nor does 10mg. Not clumps of hair more like loose strands of hair. Anyone else having these issues etc I'm male by the way. Kindest Regards
Been on buprenorphine patches & have noticed head hair loss.Now changing from 5mg to 15 mg shortly as 5 mg doesn't work on me nor does 10mg. Not clumps of hair more like loose strands of hair. Anyone else having these issues etc I'm male by the way. Kindest Regards
Fibroguy66
in
Fibromyalgia Action UK
24 days ago
Suppressed TSH on combined therapy
Is there data/medical papers I can give my doctor as to why T3 is suppressed on combination therapy? I have tried looking at the Nice guidelines but they all seem against using combination therapy.Thanks Sue
Is there data/medical papers I can give my doctor as to why T3 is suppressed on combination therapy? I have tried looking at the Nice guidelines but they all seem against using combination therapy.Thanks Sue
redhead41
in
Thyroid UK
25 days ago
diagnosis finally
Apparently I have Pelvic Congestion Syndrome !!!! I’ll take it, if I can get some help 🙄 Anyone else have this? Shceduled for a Caudal epidural anytime soon.
Apparently I have Pelvic Congestion Syndrome !!!! I’ll take it, if I can get some help 🙄 Anyone else have this? Shceduled for a Caudal epidural anytime soon.
Aprilbaby24
in
Pelvic Pain Support Network
1 month ago
Interesting research
Just saw this interesting research on DNA cause of inflammatory bowel disease, but they say it might also apply to autoimmune liver diseases. https://amp.theguardian.com/society/article/2024/jun/05/bowel-disease-hope-researchers-find-biological-pathway They hope treatments will be in use within 5
Just saw this interesting research on DNA cause of inflammatory bowel disease, but they say it might also apply to autoimmune liver diseases. https://amp.theguardian.com/society/article/2024/jun/05/bowel-disease-hope-researchers-find-biological-pathway They hope treatments will be in use within 5
Readlots
in
British Liver Trust
1 month ago
Aside from easing motor symptoms of Parkinson’s disease, deep brain stimulation (DBS) may also slow disease progression
https://parkinsonsnewstoday.com/news/dbs-reduces-toxic-clumping-parkinsons-rat-brain-cells-study/
https://parkinsonsnewstoday.com/news/dbs-reduces-toxic-clumping-parkinsons-rat-brain-cells-study/
Farooqji
in
Cure Parkinson's
2 months ago
COVID between cycles and impact on egg quality ... Any knowledge/ experience?
Hey all - so I was meant to start my next cycle of IVF in 3 weeks time. I have been so healthy; haven't caught a cold or even a sniffle for the past 12 months but have somehow managed to pick up COVID from somewhere. I've had 3 vaccines and COVID once before but am still testing very positive 6 days
Hey all - so I was meant to start my next cycle of IVF in 3 weeks time. I have been so healthy; haven't caught a cold or even a sniffle for the past 12 months but have somehow managed to pick up COVID from somewhere. I've had 3 vaccines and COVID once before but am still testing very positive 6 days
Rubylou01
in
Fertility Network UK
2 months ago
Lixisenatide as a treatment for early Parkinson’s disease progression
In this randomized controlled trial, lixisenatide reduced motor disability progression in Parkinson’s patients. 2. Individuals in the lixisenatide group experienced greater gastrointestinal side effects rates than individuals in the placebo group. Evidence Rating Level: 1 (Excellent) https:/
In this randomized controlled trial, lixisenatide reduced motor disability progression in Parkinson’s patients. 2. Individuals in the lixisenatide group experienced greater gastrointestinal side effects rates than individuals in the placebo group. Evidence Rating Level: 1 (Excellent) https:/
Farooqji
in
Cure Parkinson's
2 months ago
Stimulation period and exercise
Hello everyone,I am doing IVF through the NHS and I am now waiting for the next stage which is ovarian stimulation. The doctor told me in the first appointment that during stimulation I won't be able to do any exercise because of the ovarian torsion. I understood this was for two weeks but I have been
Hello everyone,I am doing IVF through the NHS and I am now waiting for the next stage which is ovarian stimulation. The doctor told me in the first appointment that during stimulation I won't be able to do any exercise because of the ovarian torsion. I understood this was for two weeks but I have been
Amarillo-
in
Fertility Network UK
2 months ago
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